A fury with no one to avenge

Yet I punish everyone around me, people who love me, as my terror over the forthcoming trial emerges in anger and irritation. An oncologist exacerbates matters by discouraging me from doing the trial.

Our campsite mobile home, with aunt and uncle inside!

You know when Dana in the L-Word gets breast cancer and as she’s dying starts acting like a total asshole to everyone around her? That’s me right now. I’m the asshole. (If you don’t know the L-Word, a character gets cancer and as she’s dying starts acting like a total asshole to everyone around her).

I have been consumed with anxiety and fear as I wait for a trial. The pain in my abdomen increases daily, reminding me of the precarity of my situation. I’m terrified my guts will stop working before the start date, that something will happen at the last minute to disqualify me. This has not made me a delight to be around.

We’re still in Sète until Friday morning, with my aunt and uncle. My family loves me and wants to support me, but I just am not the beacon of joy and light and gratitude I would like to be. I am irritable, impatient, furious. And then consumed with self-loathing for having been irritable and impatient and furious.

My usual strategies have been failing me. Yoga makes me too hot and I stick to the mat and my brain spirals. Long walks on the beach offer respite from the heat but even the reminder of how tiny and insignificant I am isn’t doing its magic. Aqua aerobics is distracting, but not distracting enough.

Only work, as always, helps. It’s pretty antisocial to spend time with family working, but I have been. There is so much to get done before I die. Novels to finish, essays to write, other people’s writing to edit. And I haven’t even finished my list of emergency contacts— my list of literary contacts, theatre contacts, nice people contacts—for Tim and Theadora. Because I keep working instead. I keep telling myself I have time. Which feels less true every day.

Sand monster, Sète

Here’s what just made everything worse. Yesterday afternoon I received a call from an oncologist I am not naming so as not to get her in trouble, saying that she feels strongly that I should not do this trial. It will disqualify me for all future trials, she says. When I said that they had told me there will be future studies I will qualify for, she said. “They don’t know what the future studies will require. They don’t have your interests at heart. They just want study subjects. They are only worried about their own ends.” This is probably true. She wants me to wait for the REJOICE antibody-drug conjugate (ADC) study that may begin in August but there is no start date yet. At the same time, she agrees that she doesn’t think I can wait.

So what do I do? I asked, starting to cry.

She doesn’t know. She doesn’t know how long I can afford to wait. I don’t know how long I can afford to wait. In the end, she promised she would ring me again if she hears anything at all about an ADC study before July 9. “I just wanted to share information with you,” she said. “So you can make a decision.”

I am not qualified to make this decision, yet I keep being told I am the only one who can make it. This does not seem fair. I am not an oncologist. I don’t actually know what will give me the best chance of a few more months. I would much prefer that someone with actual medical training tell me exactly what to do, but no one will.

To know this trial is wrong but to be given no alternative—and to not have time to wait for an alternative—is agony.

Having two oncologists disagree about what you should do is like watching one parent contradict your other parent.

I’ve thus expanded my investigations, writing an email to an esteemed professor in the UK with connections at the Royal Marsden and to my previous medical team at Imperial in London. In the hope that somewhere in the UK has an ADC study open. I’ll keep you posted.

Between our two weeks in Sète, where Theo is interning at a dance school, we returned home for the weekend to host a dear friend who was in the theater department of Oberlin College with me. I hadn’t seen him in years, and he is here in France on his honeymoon. We talked theatre with him and dance with his wife, a choreographer. They live and work in Seattle, where I once lived, and are both fascinating creative artists. We wandered the hills and forest, visited the Galerie Vidourle, met many of my friends, and talked and talked and talked. It was so good to have the company of old friends and to feel understood. Everything felt easy. I was bereft when they left. I wanted to convince them to move next door.

T on the beach in Sète (yes, in Doc Martins…)

Back in Sète we’ve had the company of my aunt and uncle again, who have been very helpful and patient with my dire state of mind. We have taken aqua aerobics three times together now. I want to spend as much time underwater as I can before I have to return to Sauve, several degrees warmer and without the sea and pool.

I have my scans and blood tests this coming Tuesday, and no doubt I will have an update for you a week from today. Thank you as always for thinking of me, for writing to me, for reading this. It means the world.

Old friends